Patient and caregiver knowledge of severity of injury among youth with spinal cord injury
Schottler J et al. – Many pts and caregivers do not understand the difference between complete and incomplete spinal cord injury (SCI). It is vital that an AIS diagnosis only be given following the ISCSCI exam based on agreed standards. Methods- Multi-center cross-sectional study to describe pt and caregiver knowledge of injury severity and to examine the relationship between AIS status and pt/caregiver report
- Subjects: age 1-21 yrs with stable SCI
- ISCSCI exams and interview with 4 questions
- 1) Did the pt/caregiver know the difference between complete and incomplete SCI before participation?
- 2) What level of injury does the pt/caregiver report?
- 3) What severity of injury does the pt/caregiver report?
- 4) If a severity is given, who told them and how was it tested?
Results- Difference between complete vs incomplete SCI known by 16% of pts and 20% of caregivers
- Older pts more likely to know the difference
- Caregivers of pts with shorter injury duration more likely to know the difference
- Complete SCI and a higher injury severity on AIS impairment scale more likely for those who reported an injury severity different from actual severity
- Only 18% of people able to report injury severity stated that the physician based the diagnosis on ISCSCI exam
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